Peer Research and Human Rights Training.

Peer research in the Mental Welfare Commission and HUG (action for mental health)

Peer Research and Human Rights Training.

CLEAR (Strathclyde University, Homelessness Network, The Alliance, NHS Health Scotland)

23 February 2021

Graham Morgan

Hello everyone.

I am here to talk about the peer research I do and have done in the past, why I do it, the lessons I have learnt, what it achieves; that sort of thing.

Well first of all I am not going to talk quite about that at all and secondly I am going to talk about myself first to set the scene, so to speak.

I am fifty eight, I went to university but in the way of young immature and very sensitive young men did not graduate. I wrote poems in my final exams, was carted off to the doctors to explain myself, was offered some sort of strange medical degree but refused it.

Since then I have taken almost no other courses or qualifications, I have a yacht masters theory qualification and somewhere there is a qualification that means I could talk on the radio from an oil rig to helicopters coming in to land.

So, when we talk of academia and research I have to say at the very beginning I know very little about it.

However I do know how to consult and speak to people from the communities I belong to and I know how to turn those words into reports and papers that make a difference to us.

So back to the introduction again. The reason I never completed University was because I spent my early twenties, many years ago, very lonely and very distressed. Life was grey and pointless; day and night had little meaning and neither did life itself. I found myself in a place where I had almost no friends, little confidence and very little hope that anything would ever change and very little wish for it to change.

I self-harmed a lot; I attempted suicide. I ended up in a psychiatric hospital.

Thirty eight years ago such places were nothing like the places of today. I found myself in England in one of the old Asylums, with holes in the walls, broken windows, beds pushed right next to each other; patients who had been there for decades and who had little prospect of ever leaving.

In some ways it woke me up. I had had a privileged upbringing as far as material wealth went but those few weeks and the fate of the friends I made there had a huge impact on me. From having no purpose, I found purpose and that purpose was to make a difference for other people who had mental health problems and illnesses.

I started by becoming a volunteer and setting up a drop in centre for young people with a mental illness run by young people like me who also had a mental illness. It was a wonderful and very optimistic time in my life. Along the way I found myself with a diagnosis of borderline personality disorder.

After an interlude as a yacht skipper in the Far East I returned home. This time to Scotland where I got involved in speaking up with my friends and acquaintances about how people like us were treated; about our lives, about what we saw as injustice and discrimination and suddenly found myself employed to do that speaking out; with an organisation called CAPS in Edinburgh.

It was in these years that I experienced what we call a psychotic episode, which lead to my current diagnosis of Schizophrenia and my compulsory treatment over the last eleven years.

After a few years in Edinburgh, I found myself fed up with the politics and noise of the city and moved to the Highlands where I set up HUG (action for mental health) which also acted as a voice for people with a mental illness.

It was here I painfully learnt that just saying we wanted things to change was not good enough. It lacked weight and it lacked authenticity. Who were we to say we wanted change to occur if we couldn’t evidence why it should occur or show who wanted it to occur?

It is sad that it took me so many years to learn this, but then a person on a naïve mission to change the world may be forgiven for not knowing such things nearly a quarter of a century ago.

We created a network of people with a mental illness spread across the Highlands who all wanted to see change occur and our task was to find out what that change was.

It was the start of years of travelling; going from Skye to Wick, Gairloch to Oban, Fort William to Achiltibuie; meeting people in hospitals, church halls, people’s houses, drop in centres and finding out their views on everything under the sun.

We talked about our new hospital, about employment, suicide, homelessness, crisis services, the mental health act, the environment and so on.

Over the years we got into a routine where we consulted our members on a number of issues about four times a year on topics that were of interest to them. Over the twenty years I was there we must have produced about 80 reports of our members views.

By the end of my time in the Highlands we were very used to this. It may be helpful to let you know what we did.

Every year we asked our members what our priorities were to find out about. We also had an advisory group of members who selected issues we should be looking at. In this way almost always, the things we were consulting our members on, were the issues they had already said they wanted to talk about.

We were well known in the places we went, and in most places respected. By using our own lived experiences we were able to build a trust and a familiarity that made it easier to talk. As we went to groups we learnt how to hold discussions and because we knew people very well, were able to draw in peoples viewpoints and perspectives that they may not have initially expressed.

I think the jargon is that we ran semi structured focus groups, which meant our members would think of the things we needed to ask and I would disappear off, often with another of our members to have a discussion on the subject.

We tried to keep it fun and engaging and to draw out the huge variety of opinion and experience people had.

I would take notes direct onto my lap top which was difficult and then once we had completed a round of meetings would write up the meetings and turn the results of the consultations into one big report that summarised peoples varied experiences and ideas for what needed to change.

We were always conscious that people could have contradictory opinions and so the reports of our consultations went to great effort to express that variety.

We made no effort to come to one conclusion or to force a consensus and instead felt exhilarated when people told us they had recognised things that they had said which were different to the norm and were delighted to see their views given weight in writing.

The final report would be checked with the advisory committee of HUG for accuracy, style and content and then sent out far and wide in an attempt to help those in power understand and act on our views, which they often did.

Since then I have moved to the Mental Welfare Commission where my consultations have changed. They tend to be motivated either by conversations I have had with people with lived experience or stimulated by issues we would love to find out opinions on and so are not so user led as the work I carried out in the past but as I have lived experience of mental illness and use this openly in my work this maybe alters the interactions I have with people and influences how they respond to me.

Nowadays I travel the length and breadth of Scotland and again meet people, who over the last five years, I have got to know well. I go through the same routine of an informal discussion with people in numerous groups and sometimes have one to one meetings with people who do not like to participate in groups.

I write up the notes and check that those are accurate with the group I had the discussion with and that they are willing for me to use those notes.

I have learnt some of the very basic rudiments of research and now do a basic coding of the information people have given us which helps us illustrate the final report we produce.

Instead of going back to our members the final report travels through the levels of the Commission until it is approved and finally appears in posh form on our website and hopefully leads to change.

Over the last year of lockdown I have held meetings across Scotland but via zoom. This is not as good as face to face contact but puts us in touch with people we would not otherwise have been able to be in contact with and allows us to save a huge amount of travel time. The meetings are much harder to record but will also end up as reports of the experiences, opinions and views of a wide variety of people.

I am slowly beginning to realise that a regular zoom meeting I have been having over the last year with people with lived experience may also be used to discuss and act on the reports I write and maybe to influence what we seek to find out.

I do not regard any of this as research. I do regard this as a way of finding out the views of people from the community of people with a mental illness and using that to try to create change.

When I worked with HUG this was very much led, influenced and approved by its members. There is less of this with the Commission, which I hope you know is not an organisation run by people with lived experience, but is an organisation that hopefully welcomes the voice of people like me and you.

And now some of the lessons and points I would like to make about this.

This has been my main occupation for the well 30 years. I did not get into this to create a career or anything like that.

I had some bad experiences. I met other people who had had bad experiences and between us we got talking.

That talking led to us wanting to make a difference. We didn’t think it through. We were just a group of people with a mental illness who supported each other, cared about each other and had a common vision of what would improve our world.

It was exhilarating and wonderful. I could be fashionable and say we developed organically but it would be more accurate to say we tended to be fairly chaotic groups of people who wanted to make a difference and had to painfully learn how to do this.

As time went by we learnt basic things we could have probably found out in a brief lecture from a researcher. We learnt that we would have more credibility if we sought out a wide range of diverse opinion and that the more people we included the better this would be. We made sure we expressed the variety of opinion we had, we did not restrict or try to influence the views of those we met.

We learnt that some conversations were sensitive and needed to be carried out safely and with warmth. We learnt that some stories would instantly identify people and that this was not often a good thing.

We learnt to handle the passion with which we talked and tried to make change and the disappointment we felt as we found ourselves repeating the same story for year after year to no effect.

We learnt the influence we could have on how people spoke to us and what they revealed and tried to minimise the impact of this. We learnt how to bring in quiet people who we could tell wanted to speak and to make sure those who obviously wanted to listen but not contribute were free to remain quiet.

These are the things I suppose we could have learnt from textbooks but were instead found out by shared experience and conversation and a long and painful learning.

I have never claimed the results of what I have produced count as research. I prefer to say I carry out consultations that tries to express the range of opinion people have who are a part of a community that I also belong to.

In HUG we learnt very early on that a report on say medication or ward rounds was no use on its own; we needed to act on it, we needed to use it as our evidence for the need for change.

This could vary from taking it to MSP’s, to the media, to health board officials and helping them see the value of acting on them. It was and is a long and uphill struggle that often created change in unexpected ways and sometimes resulted in little change other than the pleasure people often gained from speaking out together and sharing a little of themselves with each other.

Here in the Commission we are in the early stages of acting on the results of what I find out from people with lived experience but we are getting there. Lived experience reports inform and influence the guidance we produce, the reviews we do and the visits we carry out and these are far more likely to create change than the weight of our words when we speak from the outside in groups like HUG, which I think is a bit sad.

I hope, that as time goes by, that even though we do not have members of the Commission that people with lived experience become more and more central to the work, consultations and even research we carry out.

I love what I do, I love meeting people and sharing ideas and hoping that by doing so we make some form of change for the better.

Thank you for listening to me.

(Photo: Honeysuckle at Ardmore, 2020)